Endometriosis, often dubbed the invisible illness, is a disorder where tissue similar to the lining inside the uterus, grows outside of it, causing a chronic inflammatory reaction that may lead to scar tissue. Often involved are the ovaries, fallopian tubes and the tissue lining the pelvis. Common signs and symptoms include painful periods, pain during or after sexual intercourse, pain with bowel movements, excessive bleeding and infertility.
As you can see, pain is the keyword here, and the illness does not care about work deadlines, meetings or just your regular old 9-6 workday. It is estimated that one in ten women is affected during her reproductive years, making it just as common as diabetes (among women), but still, many people do not know about endometriosis. Discussing a woman’s menstrual cycle is still difficult for the majority, and as a result, the average time from first symptoms to diagnosis is seven years. Approximately 176 million women worldwide suffer from endometriosis, and to date, there is no known cure for endometriosis, but treatments to relieve symptoms are available.
I sat down with Bee Aneno, a 27-year old social media manager who suffers from Endometriosis, and was kind enough to share her experiences and struggles with the invisible disease. If you want to check out more about Bee, please visit her Instagram, where she passionately advocates for women with endometriosis and seeks to educate the public about the illness.
When did you start to notice the first symptoms?
“I got my first symptoms when I was around 14/15 years old. After a couple of pain-free periods, I started to suffer from severe pain, nausea, dizziness, blacking out and was unable to go to school or do anything for two days. It is common with endo to get your symptoms when you are on your menstrual cycle. I was on the pill until 21 which suppressed my symptoms. They came back worse after that with pelvic pain triggered by exercise, intercourse and food sensitivities.”
When did you actually receive your diagnosis?
“I was diagnosed in 2019 when an endometrioma was found in my right ovary. I always flagged my pain to doctors, but it was always written off. In 2017, my younger sister said I might have endo. I’d never heard of it before, and I brought this up to my doctor and my journey started there.”
What obstacles and barriers did you have to overcome?
“Being listened to by my doctors. I really believed when they told me that nothing was wrong with me and that when I have my first pregnancy, the pain will all go away. I’ve had to advocate for myself.”
How did endometriosis impact your life?
“It affected my education and work because I was always taking days off. I ended up having to work part-time in 2020 because the toll work was taking on my body in 2019 was too much for me. One great thing is it’s made me more aware of my body and how to really look after it.”
How were your experiences with past employers?
“Well, pre-diagnosis was harder because employers don’t see period pain or abdominal/pelvic pain as a reason to need to take a day off. I had a lot of trouble with explaining my needs then. Overall people seem to understand more now.”
What do you want employers to know about endometriosis?
“Realize that endo warriors want to work, but we just might need some adjustments as to how at certain times of the month as endo is cyclical. Understand that it is a chronic condition, and you have no control over it, but we do our best to help ourselves.”
Did you lose career opportunities due to your condition?
“I left working in education due to this. Luckily, I also worked in marketing, so I was able to continue that career path.”
Did you experience negative reactions from employers?
“I’ve had an experience where I had a sick day and an employer said it was unacceptable.”
What are some tips you would give other women struggling with endometriosis?
What would you wish employers would do to support women with endometriosis?
As previously mentioned, Endometriosis affects one in ten women but still has not received the attention it deserves to ease the journey of the many women that are endo warriors. Celebrities like Padma Lakshmi, Lena Dunham, Amy Schumer, Chrissy Teigen and Whoopi Goldberg have all shared their diagnosis with the world and use their public platform to educate and build awareness, but it doesn’t stop there. Before writing this article, I was aware of the disease but never put much thought into it, because I simply was not affected. After speaking with Bee Aneno and really digging deep into the research, I was astonished how many brave and amazing warriors share their stories on social media and how much comfort and support the community offers.
If you also suffer from Endometriosis or think that you might be experiencing the symptoms, don’t let your doctor or employer silence your pain and speak up for yourself. Below you can find some tips that helped Bee and that could also help you in your work life.
If you are reading this and don’t have endometriosis, try to spread awareness! You might be an employer or a person that cares and could share some of our tips for employers to help endo warriors!
Steps you can take
1. Talk to your employer about your medical condition.
2. Explain endometriosis and how it can affect your everyday work life and performance.
3. Get a letter from your specialist that explains the condition in detail for your employer.
4. Approach your employer about subtle changes that would support you in your position.
Steps you can take as an employer
1. Educate yourself about endometriosis and other invisible illnesses
2. Understand that it is a chronic disease
3. Build a supportive workplace culture
An employee with endometriosis might not want to disclose her illness or talk about it. Training your managers to be supportive might encourage your employee to be forthcoming and you can create a more safe workspace for her.
4. Allow employees to communicate their needs
Recognize that support needed may vary and that you might have to let go of the idea of a traditional workplace and employee relationship.
5. Offer flexible work arrangements
An employee with endometriosis may be experiencing severe pain on a regular basis, undergoing treatment or has to attend multiple medical appointments. Discuss flexible work arrangements to support them during this time, ranging from a change in shifts, reduced work hours, working from home and paid or unpaid leave.